A Relentless Illness—Fighting Diabetes

Mary Tyler Moore and participants at the Juvenile Diabetes Research Foundation's 2005 Children's Congress, held in the nation's capital.
Photo courtesy of Mary Tyler Moore

One of America's most talented and popular actresses is also one of the world's leading champions in the fight to control and cure type 1 diabetes.

As international chairman of the Juvenile Diabetes Research Foundation (JDRF) for more than 20 years, Mary Tyler Moore has helped achieve remarkable advances in the understanding and treatment of type 1 diabetes—even as she has fought to control her own type 1 diabetes. Her frequent visits to lobby Congress on behalf of research and her highly visible public service campaigns have helped to increase JDRF's commitment to research from a total of $25 million in 1984 to more than $1 billion today.

Recently, Moore joined with NIH and the Friends of the National Library of Medicine (FNLM) to help introduce NIH MedlinePlus magazine on Capitol Hill to gain even more visibility for the medlineplus.gov Web site and its extensive diabetes educational and clinical information resources.

Today, many people call JDRF (www.jdrf.org) "Mary's Foundation," the leading charitable funder and advocate of type 1 diabetes research.

How has diabetes affected your life?

Nearly 40 years have passed since I was diagnosed with type 1 diabetes. During this time, I have tried to take "control" of this relentless illness. The millions who suffer from diabetes still confront the specter of devastating complications, despite our best efforts. Insulin is not a cure—it is life support, enabling us to live our lives until a cure is found.

What are the symptoms of type 1 diabetes, and how can I get additional information about this disease?

Type 1 diabetes, unlike type 2 diabetes, strikes suddenly and cannot be ignored. At the time of onset, a person with type 1 diabetes feels terribly tired and off kilter. Symptoms of the disease can vary from person to person and include extreme thirst, frequent urination, drowsiness, sudden vision changes, an increased appetite, sudden weight loss, heavy breathing, sweet-smelling breath and even unconsciousness. People who suspect that either they or someone they care for might have diabetes should get to a doctor immediately.

As for additional resources, I champion the efforts that are being made through NIH MedlinePlus to provide easily understandable and reliable information on behalf of all people and their families affected with diabetes. I am honored to be part of the launch of this new publication. It will have a positive impact on the diabetes community by providing patient education, information about federally and privately supported clinical research in human volunteers, and directories of health care services and facilities.

When you were diagnosed with type 1 diabetes, did it take a while for the reality to sink in?

I was incredulous at first. I was, after all, a very healthy and active adult, and I didn't ever expect something like that to happen to me. That may be why, initially, I wasn't receptive to the regimen my doctors told me I had to follow. But they worked hard to make me understand that diabetes is a serious disease. When that sank in, then I became vigilant about managing my diabetes.

Mary's husband, S. Robert Levine, M.D., has chaired JDRF's Government Relations and Clinical Affairs Committees of the Board and recently was honored by Research!America for his volunteer and advocacy for medical and health research.
Photo courtesy of Mary Tyler Moore

You also took the step to make your diagnosis public. Why did you decide to do that?

When I was first diagnosed, I debated about how up front I should be about my diabetes, and whether telling colleagues might hinder my work as an actor. But I also realized that if I did speak out, I might be able to help others better cope and manage their diabetes. This was my thinking when I accepted the invitation to be the International Chairman of JDRF in 1984 and be in the vanguard of their efforts to find a cure for diabetes and its complications through the support of research.

My association with JDRF has enabled me to both increase diabetes awareness and to address and improve its course for others and myself. Through testimony before congressional committees, public service announcements, appearances in JDRF video reports and in person, I am proud to use my visibility to highlight the seriousness of diabetes and the critical need for increased support of research. What continues to give me great hope and optimism is my confidence that, through research, we can find a cure. In fact, for those interested in learning more about my life with diabetes, I am writing a new book that will be available in the spring of 2008.

When it comes to managing your diabetes, what part of it depends on your attitude and will power? How has your natural discipline and determination helped you in the long run?

I think that attitude and will power have an enormous effect on diabetes management. I'm fortunate to have had professional training as a dancer—which nurtured the "natural discipline" you describe. Diet and exercise were areas where I could and did exert control, with positive results. And in getting myself on the right track, I also credit the support and encouragement of my physician and best friend, my husband Robert.

Need more information on Diabetes?

Interactive Tutorials: Click on Interactive Tutorials at upper right; on the next screen, under Diseases and Conditions, click on any of four interactive tutorials on diabetes.

Health Topics: Click on Health Topics at upper left of main screen; on the next screen at lower right, click on Easy To Read; on the following screen, click on the "D" in the alphabetical listing; scroll down the next screen to find 30 articles, many also in Spanish, about diabetes

How has diabetes research affected your life and those of other diabetes sufferers?

Important research contributions from the government and public, private and not-for-profit sectors conducted over more than 35 years have made a real difference in the lives of many people—including me. For example, research, some of which was supported by JDRF, has helped to develop laser photocoagulation surgery, which arrests the progress of diabetic retinopathy and has saved me from blindness.

Research has identified a class of drugs to treat, possibly even reverse, diabetic complications of the kidney. And the magic of genetic engineering has led to the development of nerve growth factors, which may one day be the answer to painful neuropathy. There is even good reason to believe that we are not too far from being able to replace our destroyed insulin producing cells with new ones.

Also of great interest is the very promising area of diabetes research that actually involves delaying the onset of the disease itself. JDRF-funded researchers in Europe have shown that short-term treatment with an antibody, called anti-CD3, can preserve enough insulin-producing cells and simultaneously decrease the body's need for insulin for at least 18 months— possibly much longer—in children and adults with recent-onset type 1 diabetes. This "bench to bedside" research represents an important step forward in finding ways to prevent and stop type 1 diabetes by changing the clinical course of the disease.

What does the future hold for you in terms of your advocacy on behalf of Americans with diabetes?

I continue to be heartened and reassured by the responsiveness of our legislative leaders and their willingness to address the great needs we bring before them. By highlighting the staggering personal and financial costs of diabetes and the promise of a cure through research, JDRF's message is very effective and positive, and so very rewarding for me to share with members of Congress and have it heeded.